A tough day/week/month

This was “supposed” to be the post where I posted the bulk of my Sew Weekly challenge, along with an extra pic or two of Gwen goodness : ) I even dug through BOXES of photos in a vain attempt looking for pics of my daughter in one of the many of the Gwen looks I created for her through the years.

Here’s the deal: part way through the last box I just started to cry. The reason I made so many goofs with this weeks dress was not from the usual issues – tired, over worked, fill in the blank of what makes you forgetful. Nope, this is different.

If any of you read my Retro Deco Settings blog you might have seen the July 31 post last year, Harry Potter/J.K. Rowling birthday post, or the last post I did celebrating my daughter’s win at the Marin County Fair for her pic of Elora at St. Baldrick’s. These have a common theme – Ariel & Elora. They are twins, their 14th birthday is this Sunday. Ariel is in the hospital, trying to heal from her second brain surgery in the last month. Ari has cancer, a very rare and aggressive form of cancer called Rhabdomyosarcoma. (I’ve typed that so many times now it just trips off the end of my fingers.) Only 350 cases are diagnosed in this country every year so that’s rare.

When we did the first set of pics for the Harry Potter tablesetting Ari was still recovering from major brain surgery, if you look carefully you can see a lack of hair and a pale smile. She was a trooper that day, managed to stay upright and smile. She was working hard recovering and we had every hope that she’d survive the relapse she was diagnosed with in February. A few months later the cancer came back, for the third time, with a vengeance

A few weeks ago she suddenly grabbed her head and started screaming that the pain was so bad she couldn’t function, couldn’t stop screaming. Her mom called 911 and when the ambulance crew arrived they just scooped her up and ran. They were able to get her stable and ran her into “her” hospital, Children’s Hospital in Oakland, the site of the St. Baldrick’s fundraisers and where Brittany took the pictures of Elora as she shaved her head to show support for her sister and her battle.

Ari was stabilized, but a few days later the pain became unbearable again and she seized. Scans showed she had bleeding in her brain so a quick surgery was done and  they pulled 9cc of blood out. She seemed on the upswing and then a resident, not knowing Crystal hadn’t seem the final pathology report, mentioned “three” tumors in Ari’s brain when they had only known about one. On top of that Ari’s ENTIRE oncology team was out of town. Crystal, who is seriously one of the smartest women you’ll ever meet, started calling the shots and making lists. By the time the team had returned Ari was starting to bleed and seize again so another major surgery was done and 2 of the tumors removed.

I had visited them on Monday, the day after they found out about the two other tumors and three days before this last surgery. Crystal asked me to help Ari design her “most perfect” Merida dress, the female heroine from “Brave”. I promised, and immediately went to the fabric store and bought a pile of dark green stretch velvet to make her a cape. I could do that without her knowing and make it soft, so if she wanted to wear it in the hospital she could cuddle in it and use it like a blanket. While I pieced together the Frankentop for my Gwen dress, I was juggling making the cape. When she went into surgery Thursday night all I could do was cry, which is why I screwed up cutting the darn plaid thing out! She wasn’t very stable after surgery, she had many small oozing bleeds. I wondered if I’d be able to get the cape to her in time.

By Saturday she was starting to turn a corner, so I finished up the cape and prayed. I also finished the Gwen dress but honestly, the whole thing was an emotional nightmare. I do NOT recommend sewing and crying! Ari was on so many drugs for pain and infection that she was hallucinating, screaming and generally not on this planet. When my husband was in the worst of his cancer journey he was barely functional, he’s missing about 6 months of his life in his memory banks. It was awful but it wasn’t my child so I had some distance, it was a nightmare I could walk away from because there was only so much I could do, the rest was entirely up to him. It wasn’t my CHILD.

I decided that, no matter what, I would drop the cape off Monday after work. I hopped off BART and when I got to the ICU Ari was AWAKE and lucid! She was peeling the sticky stuff off her arm from the tapes that held her lines in while she struggled, she knew who I was and most importantly, she knew what I had brought her! Once again I promised her that I’d be at her party on August 19 and we’d design her perfect Merida dress. As we talked the nurses bustled into the room, they were transferring her out of ICU and back up to the Oncology floor, which may sound like a “bad” thing but it’s really very, very good : )

Today is Thursday, we were hoping that Crystal and Ari would be going home to Elora, their older bother Ian and Jason, the dad. Not so. Ari has multiple “micro bleeds” and all they want to do is keep her pain controlled. They are scheduling another scan tomorrow but her options are running out. We were “hoping” to continue to the “next” thing – first get to their 14th birthday, then to the first day of school, Halloween… Now we’re just holding our breath for Sunday.

So for the moment, I’m in tears, my chest hurts and my friends are going through one of the worst things imaginable. I had finished a corset earlier this year in a Sew Weekly challenge and called it “Ariel” after my little friend. There is an “Elora” to go with it, it’s still in pieces in a bag : ) The hope was the girls could wear them in a year or two as my models. Now all we want is Ari to see her birthday.

Here’s hoping the scans are stable, that Ari gets good pain relief and there is a party this Sunday. If you want to read about her and her journey you can go here.

I’ll get back to the regular sewing stuff in a day or two : )

4 thoughts on “A tough day/week/month

  1. Loran, please feel virtually hugged. You all sound like such wonderful people… I love the idea with the Harry Potter party. And it’s wonderful that you made Ari a Merida cape. I wish Ari, her family and you strength to get through this tough time. Djamila PS: Loved all your past contributions on SewWeekly but didn’t have time to comment.

  2. Loran, your story makes my heart hurt for you and your friends. I want and hope and pray things go smooth for Miss Ariel. So young and fragile. I hope her family and you and find strength in your faiths. Much love sent your way!

  3. Hi Loran, sending you and your wonderful family and friends the biggest hugs. I cannot imagine how awful it must be seeing poor little Ari in so much pain. I’m hopeless when my daughters are sick and I can’t do anything but wait, but neither of them has had to have the battles or the incredible pain Ari has had to fight. I’m so glad that Ari was with it enough to realise and enjoy her cape. I hope things pick up or stabilise enough for her to enjoy her birthday. Crystal really is one amazing woman isn’t she. Reading all the stuff from your post about Ari and all her setbacks is just heart-breaking. I was amazed at the plaid dress and jacket you made despite the lack of material, but the fact you made anything at all with all this going on, well I’m speechless. Wish I could be there to give you a big hug xx

  4. Hi Loran,
    I read your blogs about Ariel and Elora and feel great empathy for the girls and the family. Also sad to hear that you husband has had to deal with Cancer. Hope that is behind you now. When you get a chance, send me your direct email address so that we can discuss the Willows problems and my meeting with the Martinez City Council and other contacts. It is good to make contact again and I would love to see you costume collection.
    Charlie J.

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